Our Behind the Wall blog and book explores the emotional journey of parents who advocate for their now adult children diagnosed with serious mental illness. The primary criteria we set for this project from the beginning was that the finished work remains worthy of the parents who contributed, contain useful information, effectively convey that parents are not alone in their journey and offer hope that recovery is achievable. Our intent is to provide truth and solace.

Our interviews with parents yielded valuable information and hope. Parents needed to tell stories and we were grateful and honored to be there to listen. Throughout the interviews, consistent themes bubbled up in the stories including chaos, feelings of isolation and grief, coping, hope and recovery.

As we travel around the country for book signings and other speaking engagements, we continue to meet inspiring parents and hear stories. We consistently hear that we are not alone. There are many who live in recovery or have a loved one who does.

Because we feel a responsibility to speak on behalf of parents who share stories with us, below are a few things we’ve learned on the road we’d like to share.

What we learned on the road by talking about mental illness:

We are not alone. We cannot say this enough.Families are yearning for a voice that recognizes and understands the grief, chaos, confusion and frustration associated with living with a person who has untreated mental illness and is trying to navigate the mental healthcare system.

Hearing stories from others and telling one’s own story has shown to be informative and healing. We all need to be heard. We all need to know there is hope for the difficulties we are experiencing. Knowing what has helped others shines light into the darkness and unknowing of a mental illness diagnosis.

It often seems as if there is constant talk about mental illness in the media and the assumption is that there are resources. Yet at speaking engagements, we are reminded that when a parent or loved one begins the journey of advocating for another, feelings of isolation and grief are new, raw and overwhelming; it’s difficult to see past the roiling emotions to find resources and most importantly, hope. And that’s why we tackled this project in the first place—to address the emotional journey of parents. To help others see the long view.

In order to make a difference for families, we continue to talk about mental illness using factual, clear, non-judgmental language.

After a hospital stay, mental health professionals don’t always provide critical follow-up protocols or advice.
Recently, a parent told us that upon her son’s release from a two-week hospital stay following a mental health crisis, there was no discussion from the mental health professionals (doctors, nurses, hospital administrators) about support or follow-up. “Not one social worker or nurse recommended NAMI (National Alliance on Mental Illness) as a resource or outpatient treatment, nor referred us to a doctor to renew my son’s prescription,” she said. “We had no idea what to do. There was especially no discussion on what we, as parents, should do or even what we could read to learn more…We had no idea how to help him reintegrate into the community and go back to school.”

This may not be the case in every hospital but it certainly was the case for this family and many others. We were disappointed to learn this but were not surprised. We are aware of countless stories (some our own) in which a healthcare provider did not fully understand the larger picture of managing mental illness, nor was the important historical perspective of the parent respected or considered in the treatment, which usually resulted in problematic or even tragic outcomes. Further, after a patient’s first mental health crisis, medical professionals often fail to convey that mental illness requires long-term management.

As family members and healthcare advocates, we can continue to talk about the reality of serious mental illness and that there is support. We can also work with—and on the behalf of—our own NAMI chapters to get information about resources into the hands of mental healthcare providers, especially after a psychiatric hospitalization.

Families and those diagnosed need to hear from health care providers that there is HOPE and RECOVERY.
We have learned that mental healthcare providers don’t always understand that the parent or the loved one who serves as advocate is crucial to one’s recovery. The parent or person serving as advocate needs to be included in treatment. Period.

Studies show that a person recovering from any health trauma has a much better rate of recovery when well supported by loved ones and community. Who knows a person’s health history better than a parent who watched the illness unfold?

While Elin was speaking at a university hospital to mental healthcare providers in October, a young man who lives with schizophrenia told the group that one psychiatrist told him he would find recovery and that there is hope. The young man said, “That is what gave me hope and today I am in recovery.”

Early diagnosis is beneficial… if it’s possible.
Research shows that early intervention makes a significant difference in treating mental health issues, yet finding treatment for a person under eighteen is thwarted by a lack of available pediatric psychiatrists, a pervasive myth that individuals under eighteen cannot be diagnosed and by HIPAA laws that restrict the communication flow between parent (advocate) and medical professional. Almost every parent laments, “If only my adolescent had been diagnosed earlier…” And, “I knew my son/daughter’s behaviors were more than ‘adolescent angst but no one listened.’”

As John G. Looney, MD, MBA, Professor Emeritus of Psychiatry and Behavioral Sciences and Professor of Pediatrics at Duke University advises, therapists can treat the symptoms that are seen. There is no need for a label as long as the symptoms are being addressed. It is critical for parents, healthcare providers, and the adolescent to work as a team to address presenting symptoms.

Parents and loved ones are hurting.
Unless one has lived a similar experience, the chaos and grief are unimaginable. At book signings, we often meet parents who are deeply emotional, feeling raw from the experience. Fortunately, everyone in the room understands. And that’s what we learned: there are deeply compassionate people in the world ready to hold others upright and walk with them through difficult times. Which leads to…

We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.

The best way for parents to get support is to reach out, ask for help.
It’s hard to ask for help, but when dealing with a family member’s health crisis—let’s say it’s cancer— it’s perfectly acceptable to request help. Even commonplace to create a whole website about a person’s struggle.

Recently, my friend’s child was hospitalized for a series of procedures and surgery. They set up a CaringBridge.org web page so that friends and family could provide support—meals, errands, caring for the sibling— and could follow medical progress through the daily blog written by the child’s mother. Friends and family were thus able to provide support without feeling we were being intrusive.

Why wouldn’t we do this for a family supporting a person in a mental health crisis? Families whose loved one is hospitalized for a mental health crisis need support too. Most friends want to help but may not know how. Maybe they don’t understand mental illness. Chalk it up to stigma.

Because of stigma, mental illness is awkward. We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.

Resources are available in most communities; accessing resources can seem elusive.Families need to learn about evidence-based treatments and where to find them in their community. We are always surprised to learn how challenging it can be to obtain services for the ill person and support for the caregiver. NAMI is a great place to start in most communities, though there are many others.

Anosognosia, or the inability to recognize one’s own mental illness, is the most vexing challenge.
Anosognosia affects about 40 percent of people who live with serious mental illness. At almost every event, we get a question about how to encourage a loved one experiencing anosognosia into treatment. Anosognosia is the root of many challenges in advocating and treating a person with serious mental illness, especially those who are over eighteen. A person cannot move forward in his treatment without acknowledging the diagnosis. We always recommend Xavier Amador’s book, I AM NOT SICK! I Do Not Need Help!*Amador developed the LEAP system of dialogue to gently guide an ill person toward insight and ultimately toward recovery on his own volition.

An important note: a person is more likely to address his illness when his loved ones and others close to him are in agreement about the illness, diagnosis and treatment.

“Letting go” and self-care are difficult concepts for parents.
It goes against a parent’s instincts to think of oneself But taking care of oneself provides the sustenance to care for others. All the parents we interviewed and we meet stress the importance of taking care of oneself.

Let’s keep getting the word out about coping strategies, hope and recovery. Please introduce yourself if you attend one of our events. To find out where we will be speaking next, keep checking our event schedule at: www.behindthewallstories.com/home/gallery/

Sometimes it seems to happen overnight. In other cases, parents know there is something different about one’s child from an early age. When it hits suddenly, a parent may see signs of mental illness creeping up only in hindsight.

No matter the evolution or specific diagnosis, the journey of parenting a child with mental illness is an unfathomable challenge, unimaginable to those who have not been the parent and witnessed scenarios that even in the retelling are difficult to believe. When a child becomes increasingly symptomatic, chaos erupts in the household and the lives of each family member are affected. Not just a little, but significantly. Managing this chaos while searching for solutions for the ill family member can feel overwhelming. Yet parents get through it. The Behind the Wall parents we interviewed describe the early stages of the illness in similar terms as the steep learning curve of boot camp training with an over abundance of emotional turmoil. But the learning curve sharpens parents into invaluable advocates in managing treatment for their child; they hold the whole health history from the smallest obscure observations to the concrete details of hospitalizations and medications.

Parents and families can be integral to the recovery process. Statistically, there is a higher rate of recovery for those who are well supported by a loved one and this is usually the parent. They work harder than anyone at keeping their child safe. They fight for a diagnosis and treatment and are usually best positioned to encourage compliance. Sometimes, they even enforce treatment because they know it’s best.

But then their child turns eighteen.

Says one Behind the Wall parent, “I wanted to help my son, but I was prevented from doing so.” What a difference a day makes. At eighteen, because of HIPAA (health privacy laws), parents are effectively excised from their child’s treatment team.

After a recent mass shooting (pick one) many commentaries in the media sphere asked, “Why didn’t the parents do more to prevent this?” I’ll concede discussions of gun laws to others. And while it’s unfair to conflate violence with serious mental illness because statistics don’t bear this connection, these incidents bring the stigmatized topic of mental illness bubbling to the surface. And as an advocate, one must seize the conversation to explain that there are a myriad of reasons why a parent doesn’t have all the power to help an adult child living with serious mental illness, and the important ones hinge on eighteen.

Even when symptoms of one’s illness are present throughout a child’s whole life, behaviors often become more severe during teens and early twenties. It can take months, even years to obtain a proper diagnosis and treatment particularly when substance use is involved. It is not uncommon for a person to try several medications before finding one, or a cocktail of as many as seven at a time, to become stable not to mention functional. What may work for a year may need to be reduced, increased, or changed later. In Andrew Solomon’s New Yorker article, “The Reckoning,” Peter Lanza, whose son was the Newtown shooter, describes how Adam was given medication that caused him serious side effects. It is inferred that the medication trial did not proceed. Adam refused treatment. Usually one must try several before getting it right, though convincing a person to try medications that make one feel lousy, at least at first, is easier said than done and truthfully, all medications have some side effect. A feature common to serious mental illness, anosognosia, is defined as the inability of a person to comprehend he or she is experiencing mental illness. And it’s another serious impediment to convincing one into treatment compliance. If a parent is fortunate to obtain a diagnosis and a treatment plan that has promise for their child, it offers hope that the individual will stabilize and recognize just how ill they were before treatment. But tick tock; the clock counts down to the magic hour of one’s eighteenth birthday.

. . .expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic.

Treatment cannot be enforced on a person who is over eighteen and unless one’s child signs a HIPAA release, the person(s) who hold the whole medical history, the parent, can effectively be excluded from healthcare decisions. Parents have told us they call their child’s therapist and say, “I know you cannot tell me anything, so I’ll feed you information.” It bears pointing out that expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic. Kerri, a Behind the Wall contributor, tried bringing clothes to the hospital that her son called to request. But because he forgot to sign HIPAA papers, and forgot to tell her where he was, she couldn’t bring his clothes or even visit him for days. Losing a healthcare advocate in a parent because of the over-eighteen law presents serious dangers considering that a parent knows through shared experience how a certain medication has triggered mania for their child, for example, or severe and lethal tachycardia.

Fortunately, these barriers that parents encounter have become a salient to mental healthcare discussions and better yet, to proposed legislation (see links below for information about Murphy’s Law.)

No person in this known world excuses violence perpetrated by a person who lives with mental illness or experiencing psychosis. Those who do live with and successfully manage their mental illness most certainly don’t accept this message. Instead of asking, “Why didn’t the parents do something to prevent this?” Perhaps the real question is, “How can we address this over-age-eighteen issue?”

Because the truth is, these parents need our support not our judgment.